Presentation on Disability Rights Timeline by students in my 1:54 Autism Class.
Image Credit Oliver Maynard & Sridha Hordagoda
This is about my mother
Written by one of students in my 1:54 Autism Decal class as her final reflection assignment for the class.
"It's based both on the sources and a little bit on my own family. You can share it on your blog! Thank you for teaching this wonderful class" Myr-An Le
=========
THIS IS ABOUT MY MOTHER
Sometimes, I wonder what I must look like to my mom.
I've outgrown the cradle of her arms,
but am I still small in her hands?
By the time you are given breath to exist,
I want to have learned the secret to being brave.
- Excerpt from To The Child I May Never Have
My mom is 50 years old. Hair dyed dark with box dye for the last two decades. Eyes sharp and discerning, but I never know what she’s looking at. When she stands, she looks like she was stitched to stand right where she is. You don’t wonder why she is there, in your doorway with a plate of plum slices or in the grocery store eyeing unit prices or on the tarmac loading the airplane.
She has been a lot of things: daughter, eldest of seven, Catholic, 1.5 generation Vietnamese American, atheist, 1st generation college graduate, CFO of a hair salon, wife, substitute teacher, airline worker, accountant, family matriarch, mom.
Growing up, she used to tell me, “I always thought nurture beat nature until I had kids. Now, I forgive your father because I love you.”
Lately, I find myself asking, “Why?”
Why did you do this, why do you think this, why are you like this. I want to be able to unravel my mom’s hidden past and piece it back together.
There is very little discussion on autistic parents. Autism is something described most frequently in young children and rarely in adults. How could an autistic person grow to be an adult, let alone have children? And yet, autism is also understood to be hereditary.
Being an autistic parent has its own unique challenges.
In “Motherhood: Autistic Parenting,” Cynthia Kim writes that “Being a mom is an inherently social activity.” She describes a problem many autistic mothers have while raising their children. How do you teach a child to socialize when you struggle with it yourself?
Motherhood involves setting up playdates, chatting with other parents as your children play, and playing with your children too. And, unlike most social interactions, it’s a full-time job.
Growing up, my mom carefully taught me rules. This is how you talk to people about their family. This is how you talk about achievements. This is how you walk and this is how you smile. When people say this, you can ask that, and when you get a gift, you do this.
She has rules for everything in life. Not for me and my sister, but for everyone. From my mom’s point of view, there is a way things should be and a way things shouldn’t be, and she does not enjoy accepting the disparity between the ideal and our reality even if she understands the wisdom of this acceptance.
As many rules as there are in my mom, there is also a great capacity for change. “I had to force myself to hug you when you were growing up,” my mom tells me one evening.
This sentence does not register as cruel to me, although it does stay with me for the rest of my life. I see it for its truth: evidence of a love in spite of. And I am grateful for a mom incapable of change somehow, against all odds, changing.
This is for you, my mom says. But really,
she must mean
she thinks of me.
- Excerpt from Watercolor Plum
In my experience, autism does not exist in Vietnamese communities. Early traits of autism like sorting toys and being quiet are signs of a good child who might be mathematically inclined, the family’s next engineer. When those traits develop into selective mutism or antisocial behavior, they aren’t recognized as a group of interconnected behaviors stemming from a neurodivergency. They are seen as individual characteristics, some problematic and others valuable.
20 percent of all students in classrooms are served under the Individuals with Disabilities Education Act (IDEA). When these numbers are broken down by ethnicity, 7 percent of all Asian students are served by this act. Autism is already extremely underdiagnosed in general. This issue is further exacerbated in some Asian communities where learning disabilities are personality traits.
There are foils. My sister is mute until kindergarten. My mother, knowingly, sees herself in my sister, and she does what she thinks would have helped her. She sometimes says, jokingly, “Your sister is a little on the spectrum,” but she does not take on the label for herself until I am 19 and she is 49. She never worries about my sister because she knows that problems come and go for “people like us.”
I have an aunt on my dad’s side. Like my mom, she’s an eldest daughter who immigrated to America with her parents at a young age because of the Vietnam War.
Nobody talks about my aunt who never learned how to hold a conversation, patiently completes jigsaw puzzle after jigsaw puzzle, and excitedly tries to convince anyone nearby to watch YouTube videos of people caring for dolls.
Here is something almost any Vietnamese American person can confirm: the older Vietnamese generations do not talk about trauma. I did not learn my father was a boat refugee until I was in college. Until I asked, I was not told that my mother’s dad likely has a passport for a nation that no longer exists. Until I asked, I was not told that my father’s mom came here first, alone without her husband or a word of English and with three kids in tow, the eldest of which is likely intellectually disabled.
I often wonder what parts of my mom have gone unspoken. Nobody talks about the ways they fail. But I’m here now, and I feel like I am failing.
I want to ask her, “Was it hard for you like this? Is it in my nature to be this way and I will find my way out? Or did I grow up too different from you to be as happy as you are now?”
World blue, Mother Earth, treat me well, please.
Please, hold my hand and tell me I will be okay, and
life is not so bad
- Excerpt from Father Sky
In the same way my sister breaks a Rubik’s cube, I am taking my mom apart and piecing her back together in the hopes that I can discover what we are composed of today. There is nothing so interesting as discovering that what appears to be a collection of moving parts is, at its core, one thing alone.
SOURCES
“Motherhood: Autistic Parenting” by Cynthia Kim:
https://awnnetwork.org/motherhood-autistic-parenting/
“The unexpected plus of parenting with autism” by Sarah Deweerdt:
https://www.spectrumnews.org/features/deep-dive/unexpected-plus-parenting-autism/
“In Asian communities, raising a child with autism can be a lonely, difficult road” by Melody
Cao:
https://centerforhealthjournalism.org/2015/07/16/asian-communities-raising-child-autism-can-be
-lonely-difficult-road
“Why Asian American kids are under-diagnosed when it comes to learning disabilities” by
Victoria Namkung:
https://www.nbcnews.com/news/asian-america/asian-american-kids-are-diagnosed-comes-learning-disabilities-rcna2425
“Why Can’t We Talk About Autism in the Asian-American Community?” by Sunny Jang:
https://www.autismparentingmagazine.com/autism-asian-american-community/
THIS IS ABOUT MY MOTHER
Sometimes, I wonder what I must look like to my mom.
I've outgrown the cradle of her arms,
but am I still small in her hands?
By the time you are given breath to exist,
I want to have learned the secret to being brave.
- Excerpt from To The Child I May Never Have
My mom is 50 years old. Hair dyed dark with box dye for the last two decades. Eyes sharp and discerning, but I never know what she’s looking at. When she stands, she looks like she was stitched to stand right where she is. You don’t wonder why she is there, in your doorway with a plate of plum slices or in the grocery store eyeing unit prices or on the tarmac loading the airplane.
She has been a lot of things: daughter, eldest of seven, Catholic, 1.5 generation Vietnamese American, atheist, 1st generation college graduate, CFO of a hair salon, wife, substitute teacher, airline worker, accountant, family matriarch, mom.
Growing up, she used to tell me, “I always thought nurture beat nature until I had kids. Now, I forgive your father because I love you.”
Lately, I find myself asking, “Why?”
Why did you do this, why do you think this, why are you like this. I want to be able to unravel my mom’s hidden past and piece it back together.
There is very little discussion on autistic parents. Autism is something described most frequently in young children and rarely in adults. How could an autistic person grow to be an adult, let alone have children? And yet, autism is also understood to be hereditary.
Being an autistic parent has its own unique challenges.
In “Motherhood: Autistic Parenting,” Cynthia Kim writes that “Being a mom is an inherently social activity.” She describes a problem many autistic mothers have while raising their children. How do you teach a child to socialize when you struggle with it yourself?
Motherhood involves setting up playdates, chatting with other parents as your children play, and playing with your children too. And, unlike most social interactions, it’s a full-time job.
Growing up, my mom carefully taught me rules. This is how you talk to people about their family. This is how you talk about achievements. This is how you walk and this is how you smile. When people say this, you can ask that, and when you get a gift, you do this.
She has rules for everything in life. Not for me and my sister, but for everyone. From my mom’s point of view, there is a way things should be and a way things shouldn’t be, and she does not enjoy accepting the disparity between the ideal and our reality even if she understands the wisdom of this acceptance.
As many rules as there are in my mom, there is also a great capacity for change. “I had to force myself to hug you when you were growing up,” my mom tells me one evening.
This sentence does not register as cruel to me, although it does stay with me for the rest of my life. I see it for its truth: evidence of a love in spite of. And I am grateful for a mom incapable of change somehow, against all odds, changing.
This is for you, my mom says. But really,
she must mean
she thinks of me.
- Excerpt from Watercolor Plum
In my experience, autism does not exist in Vietnamese communities. Early traits of autism like sorting toys and being quiet are signs of a good child who might be mathematically inclined, the family’s next engineer. When those traits develop into selective mutism or antisocial behavior, they aren’t recognized as a group of interconnected behaviors stemming from a neurodivergency. They are seen as individual characteristics, some problematic and others valuable.
20 percent of all students in classrooms are served under the Individuals with Disabilities Education Act (IDEA). When these numbers are broken down by ethnicity, 7 percent of all Asian students are served by this act. Autism is already extremely underdiagnosed in general. This issue is further exacerbated in some Asian communities where learning disabilities are personality traits.
There are foils. My sister is mute until kindergarten. My mother, knowingly, sees herself in my sister, and she does what she thinks would have helped her. She sometimes says, jokingly, “Your sister is a little on the spectrum,” but she does not take on the label for herself until I am 19 and she is 49. She never worries about my sister because she knows that problems come and go for “people like us.”
I have an aunt on my dad’s side. Like my mom, she’s an eldest daughter who immigrated to America with her parents at a young age because of the Vietnam War.
Nobody talks about my aunt who never learned how to hold a conversation, patiently completes jigsaw puzzle after jigsaw puzzle, and excitedly tries to convince anyone nearby to watch YouTube videos of people caring for dolls.
Here is something almost any Vietnamese American person can confirm: the older Vietnamese generations do not talk about trauma. I did not learn my father was a boat refugee until I was in college. Until I asked, I was not told that my mother’s dad likely has a passport for a nation that no longer exists. Until I asked, I was not told that my father’s mom came here first, alone without her husband or a word of English and with three kids in tow, the eldest of which is likely intellectually disabled.
I often wonder what parts of my mom have gone unspoken. Nobody talks about the ways they fail. But I’m here now, and I feel like I am failing.
I want to ask her, “Was it hard for you like this? Is it in my nature to be this way and I will find my way out? Or did I grow up too different from you to be as happy as you are now?”
World blue, Mother Earth, treat me well, please.
Please, hold my hand and tell me I will be okay, and
life is not so bad
- Excerpt from Father Sky
In the same way my sister breaks a Rubik’s cube, I am taking my mom apart and piecing her back together in the hopes that I can discover what we are composed of today. There is nothing so interesting as discovering that what appears to be a collection of moving parts is, at its core, one thing alone.
SOURCES
“Motherhood: Autistic Parenting” by Cynthia Kim:
https://awnnetwork.org/motherhood-autistic-parenting/
“The unexpected plus of parenting with autism” by Sarah Deweerdt:
https://www.spectrumnews.org/features/deep-dive/unexpected-plus-parenting-autism/
“In Asian communities, raising a child with autism can be a lonely, difficult road” by Melody
Cao:
https://centerforhealthjournalism.org/2015/07/16/asian-communities-raising-child-autism-can-be
-lonely-difficult-road
“Why Asian American kids are under-diagnosed when it comes to learning disabilities” by
Victoria Namkung:
https://www.nbcnews.com/news/asian-america/asian-american-kids-are-diagnosed-comes-learning-disabilities-rcna2425
“Why Can’t We Talk About Autism in the Asian-American Community?” by Sunny Jang:
https://www.autismparentingmagazine.com/autism-asian-american-community/
Spectrum At Cal 10th 5K Run
The speech I gave at the Spectrum At Cal event today
Hi everyone. My name is Hari Srinivasan.
Welcome to our in person 5 K run. We are so happy to be back, after the two years of uncertainty, that the pandemic had forced on us. I’m a senior here at Berkeley. I also teach a class on autism here at Berkeley.
I've been part of this amazing Spectrum At Cal for most of my time here and had the privilege of being president of this wonderful student organization, last year. Spectrum at Cal provided a community for me during my time here at Berkeley. Spectrum at Cal not only does autism outreach, both within and outside the campus, but also all manner of volunteering activities, and fundraising, which go right back to community organizations, that support individuals on the spectrum. Our organization has grown so much even during the time I've been a Berkeley. If you are a local organization interested in partnering with us, please do reach out to us. Let's make change happen.
I'm super thrilled to have spent my undergraduate years at Berkeley, which is really the birthplace of the disability rights movement. We boast of the first ever disabled students program, with other universities in the country and across the world, learning from us. It did start off for physical disabilities, but grew to include all manner of disabilities.
Today, Autism, is one of the fastest growing neurodevelopmental disabilities. Autism in all its forms, has a voice and we want to make it heard. Did you know my friend David, and I are the first, and only two non speaking autistic students to be admitted to Berkeley. It goes to show that autism too, is a diversity category, with the wide range of neurodiverse minds, that come with it. Autism is not a one size fits all disability, so we need to be flexible, and open minded to accommodate everyone, even the most marginalized amongst us.
What you're hearing, is my text to speech voice, as I am a minimally speaking autistic. I need to use alternative technology for most conversations, as I can only speak a few basic words. Technology is not perfect, and not always intuitive to use, but it helps me get by. It is unfortunate that, society has somehow conflated cognition with the ability to be able to use your mouth muscles to talk. Which is just an ill logical idea, and rather ridiculous really.
As a result, we nonspeaking autistics are generally not thought to be, worthy of education, let alone college. We face tremendous gatekeeping of opportunities in all manner of areas, all our lives. Everyone deserves the same opportunity of education, inclusion, and belonging.
Every life has worth. I repeat, every life deserves worth.
I've personally very proud of the t-shirt, that Spectrum designed last year, which I am wearing. We all belong. We all belong. You belong and I belong. And belonging is an idea, I'm very passionate about.
There is a big difference in the idea of awareness, acceptance, inclusion and belonging. Awareness is passive, which leads to some sort of acceptance, or what I like to think of as, tolerance of our presence.
Inclusion for most part means, being allowed to exist in the same space as our non disabled peers. It's like sitting in the same classroom, as your non disabled peers, but both of you are on parallel tracks that never intersect.
What you're hearing, is my text to speech voice, as I am a minimally speaking autistic. I need to use alternative technology for most conversations, as I can only speak a few basic words. Technology is not perfect, and not always intuitive to use, but it helps me get by. It is unfortunate that, society has somehow conflated cognition with the ability to be able to use your mouth muscles to talk. Which is just an ill logical idea, and rather ridiculous really.
As a result, we nonspeaking autistics are generally not thought to be, worthy of education, let alone college. We face tremendous gatekeeping of opportunities in all manner of areas, all our lives. Everyone deserves the same opportunity of education, inclusion, and belonging.
Every life has worth. I repeat, every life deserves worth.
I've personally very proud of the t-shirt, that Spectrum designed last year, which I am wearing. We all belong. We all belong. You belong and I belong. And belonging is an idea, I'm very passionate about.
There is a big difference in the idea of awareness, acceptance, inclusion and belonging. Awareness is passive, which leads to some sort of acceptance, or what I like to think of as, tolerance of our presence.
Inclusion for most part means, being allowed to exist in the same space as our non disabled peers. It's like sitting in the same classroom, as your non disabled peers, but both of you are on parallel tracks that never intersect.
But Belonging is really the key, where you feel you are a part of a community.When your life is seen as having worth. Where you belong, and I too belong.
Only with more exposure to all manner of autistics, will there be a change in mindsets, and greater belonging. It can be a win-win for all.
The diversity of autism, is like a cocoon, that morphs into all sorts of unexpected colorful butterflies. If you notice our logo is a butterfly. The butterfly effect, says a small local change, can lead to profound, and complex changes around the world. The two butterflies intertwine, and spread out their wings. That is what you are all doing here today by participating. You are all part of the butterfly effect, that will change the way autism is perceived, understood, and accepted. And how we can all belong. If there is just one thing you got out of what I said today, go home with the idea of promoting belonging.
Welcome again to Spectrum at Cal's, 5K run.
A big shout out to my fellow spectrum members and to all the amazing volunteers, who have helped put this wonderful event together.
Have fun everyone.
Thank you.
Only with more exposure to all manner of autistics, will there be a change in mindsets, and greater belonging. It can be a win-win for all.
The diversity of autism, is like a cocoon, that morphs into all sorts of unexpected colorful butterflies. If you notice our logo is a butterfly. The butterfly effect, says a small local change, can lead to profound, and complex changes around the world. The two butterflies intertwine, and spread out their wings. That is what you are all doing here today by participating. You are all part of the butterfly effect, that will change the way autism is perceived, understood, and accepted. And how we can all belong. If there is just one thing you got out of what I said today, go home with the idea of promoting belonging.
Welcome again to Spectrum at Cal's, 5K run.
A big shout out to my fellow spectrum members and to all the amazing volunteers, who have helped put this wonderful event together.
Have fun everyone.
Thank you.
https://youtu.be/MRGc4GMbXqs
Here's the talk on ABC News
https://abc7news.com/11704823/?fbclid=IwAR2YUlLmFiCZa0K4i-EcZRwq1NOU-g87UB2WurgAjepzDckLX4BUnY8kZNk
and entertainment from the Cal Band and California Overtures.
A Timeline of Autism
Early Observations (Pre-1940s): Autism Before Its Recognition
1950s: Psychoanalytic Theories and Misunderstandings
1960 - 70s: The Rise of Advocacy and Early Research Shifts
1980s: Diagnostic Shifts and Broader Recognition
1990s: Expanding the Spectrum and Advocacy Growth
2000s: Rise of Neurodiversity and Genetic Research
- 1799: French physician Jean-Marc Gaspard Itard reports on Victor, the "Wild Boy of Aveyron," a child with social withdrawal and language delays, traits that later align with autism.
- 1908: Swiss psychiatrist Eugen Bleuler coins the term "autism" (from the Greek "autos," meaning self) to describe social withdrawal in individuals with schizophrenia. This sets the stage for early misconceptions, linking autism to schizophrenia for decades.
- 1943: Leo Kanner, an Austrian-American psychiatrist, publishes Autistic Disturbances of Affective Contact, describing 11 children with distinct traits like social withdrawal, communication issues, and repetitive behaviors. He coins the term "early infantile autism" and believes it is a lifelong condition caused by an innate inability to form affective contact. Kanner also suggests a biological basis but notes that parenting styles could contribute, which lays the groundwork for later misguided theories around 'refrigerator moms'
- 1944: Austrian pediatrician Hans Asperger publishes a paper on children with behaviors similar to Kanner’s description but with stronger verbal abilities. Asperger describes the condition as "autistic psychopathy", later known as Asperger syndrome.
- 1947: Kanner notes that many autistic children have above-average memory and specific areas of talent, observing what would later be understood as savant syndrome.
1950s: Psychoanalytic Theories and Misunderstandings
- 1950s. Institutionalization is common for autistic children (and real life institutions don't look the high end resort-like setting shown in RainMan)
- 1950s: Bruno Bettelheim promotes the "refrigerator mother" theory, blaming emotionally distant mothers for causing autism. This theory, grounded in psychoanalysis, dominates for decades and contributes to a stigma around autism, despite later being debunked. In 1967, Bettelheim publishes The Empty Fortress, further expanding on his theory by comparing autistic children to prisoners in emotional isolation, a concept later widely discredited for its lack of scientific basis.
- 1956: Researcher Paul Eugen Bleuler, who first coined "autism" to describe withdrawal in schizophrenia, influences early confusion between autism and schizophrenia. Autism is often misdiagnosed as childhood schizophrenia, or emotional disturbance as there is little understanding of its distinct nature.
1960 - 70s: The Rise of Advocacy and Early Research Shifts
- 1964: Temple Grandin, who later becomes one of the most famous autistic advocates, is diagnosed with autism at age 16. Her later work will help shed light on sensory sensitivities in autism and emphasize the potential of autistic individuals.
- 1964: Psychologist Bernard Rimland, the father of an autistic child, publishes Infantile Autism, which challenges the refrigerator mother theory and argues for a biological cause of autism. Rimland's work is pivotal in shifting the focus toward neurological and genetic research.
- 1964: Civil Rights Bill Bypasses People with Disabilities. While the Act helps end discrimination against racial minority groups and women in the workplace, it does not make provision for people with disabilities. The difference is that when considering civil rights for disabilities you need not just a seat on the bus but a way to get into that bus.
- 1965: Rimland along with Ruth Sullivan found the Autism Society of America (ASA) one of the first national organizations in the US dedicated to autism advocacy, supporting families and promoting research.
- 1967: "Autism: The Invisible Wall", a television documentary in the UK, helps bring autism to public attention by focusing on the challenges and misunderstood nature of autistic individuals.
- 1967: ICD-8 (Eighth Revision). The International Classification of Diseases released by Word Health Organization includes childhood psychosis and other related terms, but autism itself is not yet a distinct diagnostic category. Autism is often conflated with schizophrenia or broader childhood psychotic disorders.
- 1974: Last of the Ugly Laws Repealed.
- 1975: The US passes the Education for All Handicapped Children Act (EAHCA), which mandates free public education for children with disabilities, including autism. This later evolves into the Individuals with Disabilities Education Act (IDEA) in 1990.
- 1977: Twin studies by Folstein and Rutter provide the first strong evidence for a genetic component to autism, marking a major shift away from psychoanalytic theories. This study reveals that autism has a higher concordance rate in identical twins than in fraternal twins.
- 1977: ICD-9 (Ninth Revision) introduces Infantile Autism under the category of pervasive developmental disorders (PDD). This marks the first time autism is officially recognized as a separate diagnostic entity in the ICD system. The criteria are still relatively broad, and autism is seen as a disorder affecting early childhood development.
1980s: Diagnostic Shifts and Broader Recognition
- 1980: The DSM-III officially recognizes autism as a distinct diagnosis, separate from childhood schizophrenia, under the term "Infantile Autism". This formalizes autism’s recognition within psychiatry.
- 1981: British psychiatrist Lorna Wing introduces the term Autism Spectrum Disorder (ASD), emphasizing the broad range of abilities and challenges in autistic individuals. She also popularizes Asperger syndrome in the English-speaking world.
- 1985: The diagnostic ratio of autism is estimated to be 4 to 5 in every 10,000 children. This reflects limited awareness and more restrictive diagnostic criteria.
- 1987: The DSM-III-R revises the criteria for autism, leading to increased diagnoses.
- 1987: Behavioral psychologist Ivar Lovaas publishes results of Applied Behavioral Analysis (ABA) in improving behaviors in some autistic children. ABA remains controversial today due to criticisms from the autistic community about its social validity and ethics of behavior modification and its use of aversives like shocks to achieve the higher success results. Shocks continue to be used in centers like the JRC (Judge Rotenberg Center) even today.
- 1988: The film Rain Man, starring Dustin Hoffman as an autistic savant, brings autism into the cultural spotlight, although it reinforces stereotypes of autism as tied to intellectual disability or savant syndrome.
1990s: Expanding the Spectrum and Advocacy Growth
- 1990: Americans with Disabilities Act signed into law by Pres George HW Bush.
- 1990: The Individuals with Disabilities Education Act (IDEA) reinforces the right to free public education and Individualized Education Programs (IEPs) for students with autism, helping ensure their integration into the educational system.
- 1991: Autism is officially added as a special education category under IDEA, securing services for autistic students.
- 1993: The National Autistic Society (NAS) in the UK launches "Autism Awareness Year", one of the first large-scale efforts to raise public awareness about autism.
- 1993: ICD-10 (Tenth Revision) significantly revises the classification of autism. Autism Spectrum Disorders (ASD) are grouped under Pervasive Developmental Disorders (PDD). Subtypes include Childhood Autism, Atypical Autism, Asperger’s Syndrome, Rett Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). ICD-10’s structure allows for a more nuanced understanding of autism and its variations, with greater distinction between different developmental disorders.
- 1994: The DSM-IV expands the definition of autism to include Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), marking a significant shift in recognizing autism as a spectrum. The diagnostic ratio rises to about 1 in 1,000 children.
- 1995: The Yale Child Study Center launches the Yale Early Social Cognition Program, pioneering research on autism's social cognition and brain development.
- 1997: Lorna Wing introduces the "triad of impairments": social interaction, communication, and flexibility of thought, which becomes a core diagnostic feature of autism. This framework helped shape diagnostic criteria and broadened the understanding of autism as a spectrum.
- 1997: The UN's Standard Rules on the Equalization of Opportunities for Persons with Disabilities (adopted in 1993) begins to include autism under broader disability rights frameworks, encouraging global awareness and inclusion
- 1998: A study by Andrew Wakefield links the MMR vaccine to autism leads to much controversy.
- 1999: The Treatment and Education of Autistic and related Communication-handicapped Children (TEACCH) program gains recognition for early intervention and structured teaching.
- 1999: Olmstead Act requires deinstitutionalization.
2000s: Rise of Neurodiversity and Genetic Research
- 2000: Autism Speaks is founded, becoming one of the largest autism advocacy organizations, though it faces criticism from autistic self-advocates for its earlier messaging on curing autism rather than supporting neurodiversity.
- 2001: The United Nations establishes World Autism Awareness Day, observed annually on April 2, raising global awareness about autism.
- 2002: The Autism Genome Project is launched and is one of the largest international efforts to study the genetic basis of autism
- 2003: Autism Network International (ANI) starts hosting Autreat, a retreat for autistic individuals designed by autistic people. Autreat becomes a symbol of the burgeoning autistic self-advocacy movement.
- 2005: Beijing Stars and Rain, China’s first non-governmental organization for autism, begins gaining international attention for promoting autism education and parent training programs. The organization becomes a model for other regions in China, raising awareness in a country with limited services for autism.
- 2001-2007: Autism diagnosis rates surge. By 2007, the CDC reports autism prevalence at 1 in 150 children. Improved diagnostic criteria and growing awareness contribute to these higher rates.
- 2006: The Autism Self-Advocacy Network (ASAN) is founded by Ari Ne'eman advocating for autistic individuals to have a voice in policy and research decisions.
- 2006: The documentary "Autism: The Musical" is released, portraying the lives of five autistic children and their participation in a musical production, showing the diversity of the autism spectrum and challenging preconceived notions.
- 2006: The Combating Autism Act (CAA) is signed into law by President George W. Bush. It authorizes increased federal funding for autism research, early detection, intervention, and services. It also establishes the Interagency Autism Coordinating Committee (IACC) to coordinate federal efforts related to autism and services. This marked the first formal effort by the US government to streamline and prioritize autism research across various agencies.
- 2007: The Autism Genome Project publishes its first major findings identifying several genetic markers linked to autism, though no single "autism gene" is found. Early findings reveal the complexity of autism, linked to hundreds of different genes, each contributing in small ways.
- 2007: The UN General Assembly designates April 2 as World Autism Awareness Day (WAAD), increasing global recognition and advocacy efforts.
- 2008: The Convention on the Rights of Persons with Disabilities (UNCRPD) is adopted by the United Nations, affirming the rights of individuals with disabilities, including autistic individuals, to equal access in education, employment, and healthcare.
- 2008: The WHO supports the UNCRPD, pushing for global health strategies that include autism within the broader disability rights movement.
- 2009: Latin America takes steps towards developing autism strategies with the creation of Red Espectro Autista Latinoamerica (REAL), a regional network advocating for autism diagnosis, intervention, and inclusion throughout Latin America. Countries such as Argentina, Brazil, and Mexico begin improving public understanding and launching pilot autism support programs.
- 2009: The IACC releases its first Strategic Plan for Autism Research, outlining key priorities for autism research. It sets goals to improve early identification, better understand autism’s biology, and develop new interventions and services. This plan becomes a guiding document for federal funding and research efforts.
- 2009: Rosa's Law enacted. Pres Obama signs legislation that replaces the term "Mental Retardation" with term "Intellectual Disability". The Law is named for 9 year old Rosa Marcellino, a young advocate with Down's Syndrome
2010s: Scientific Advancements and Cultural Shifts
- 2011: Ari Ne'eman becomes the first openly autistic person appointed to the US National Council on Disability, a milestone in autistic representation in federal policymaking.
- 2011: The Combating Autism Reauthorization Act (CARA) extends the provisions of the original act, continuing federal funding for autism research, services, and early interventions. It emphasizes improving services for autistic children and adolescents
- 2011: The IACC updates its Strategic Plan with a greater focus on lifespan issues, including services for autistic adults, employment, and quality of life. The update also emphasizes the need for research into co-occurring conditions such as epilepsy, gastrointestinal issues, and mental health disorders in autistic individuals.
- 2012: The "Autism at Work" initiative is launched by major corporations like SAP, Microsoft, and JP Morgan Chase, focusing on hiring autistic individuals for their unique strengths, especially in tech and data analysis.
- 2012: Brazil passed the Autism Law ("Lei Berenice Piana"), recognizing autism as a disability, which entitled autistic individuals to full access to education and healthcare. This law set a global precedent for autism recognition in developing nations.
- 2012: The Autism Society of South Africa leads efforts to raise awareness and advocate for governmental support for autistic individuals. Although access to services remains limited, the organization plays a key role in educating the public and promoting early intervention programs.
- 2013: The DSM-5 combines autism subtypes (Autism, Asperger syndrome, PDD-NOS) into one unified diagnosis, Autism Spectrum Disorder (ASD), reflecting the diversity of autistic experiences. The prevalence rate continues to rise, with the CDC estimating 1 in 88 children diagnosed.
- 2013: WHO focus on Autism in Low and Middle Income Countries. The WHO emphasizes the lack of autism services in low- and middle-income countries and highlights the global disparity in autism diagnosis, treatment, and support services. WHO launches efforts to promote capacity-building and improve access to autism services worldwide
- 2014: The CDC estimates 1 in 68 children in the US are diagnosed with autism, reflecting improved diagnostic practices and growing awareness.
- 2014:The Autism CARES Act (which stands for Autism Collaboration, Accountability, Research, Education, and Support) is passed, reauthorizing and expanding federal efforts under the CAA. It introduces a new focus on lifelong services and supports for autistic adults, addressing the need for transitioning from childhood services to adult care.
- 2014: The WHO includes autism in its Comprehensive Mental Health Action Plan (2013-2020), calling for international collaboration to enhance early identification, intervention, and care for individuals with autism. This plan focuses on improving mental health services for people with neurological and developmental disorders, including autism, especially in resource-poor settings
- 2014: South Africa holds Africa's first National Autism Conference, bringing autism research and advocacy to the continent. South Africa's focus grows on early diagnosis and intervention, as well as inclusion in education.
- 2014: The Global Autism Public Health (GAPH) Initiative, launched by Autism Speaks, collaborates with ministries of health in Bangladesh, Kenya, Mexico, South Africa, and other countries to create national autism action plans. These plans focus on building capacity for early detection, screening, training professionals, and raising public awareness. In Bangladesh, the Shuchona Foundation leads national autism awareness campaigns, addressing the need for policies that include neurodevelopmental disorders in healthcare frameworks. In Kenya, GAPH partners with local organizations to train healthcare providers and teachers, helping to identify autism early and provide educational support.
- 2015: The first Autistic Pride Day is celebrated, organized by autistic self-advocates to promote acceptance and emphasize the strengths of neurodiversity.
- 2015: Countries like Saudi Arabia and Jordan begin developing autism centers and services in response to increased autism awareness in the region. In Saudi Arabia, the Jeddah Autism Center provides early intervention and support programs, becoming a key resource for families in the region.
- 2017: India issues its first National Guidelines on Autism under the Ministry of Health and Family Welfare. These guidelines emphasize the need for early screening, public awareness, and inclusive education for autistic individuals. They also advocate for better training for healthcare professionals to recognize autism in early childhood.
- 2017: The CDC reports autism prevalence has risen to 1 in 59 children, driven by broader diagnostic practices and increased awareness.
- 2017: The IACC releases a new Strategic Plan that broadens its focus to include employment, healthcare, and service needs for autistic adults. This plan highlights the importance of research aimed at improving the quality of life for autistic individuals throughout their lifespan, with an emphasis on transitioning to adulthood.
- 2017: The Journal of Autism and Developmental Disorders publishes a study showing the higher likelihood of co-occurring conditions, such as anxiety and epilepsy, in autistic individuals. This leads to greater focus on holistic healthcare for autistic people.
- 2018: The World Bank and the World Health Organization (WHO) partner with several South Asian countries, including Nepal, Sri Lanka, and Bangladesh, to promote autism-friendly healthcare services. This collaboration focuses on creating autism awareness campaigns and building healthcare capacity for diagnosis and treatment in resource-limited areas.
- 2019: The Autism CARES Act reauthorization is signed into law, continuing the initiatives set forth by the previous acts. It further expands the focus on autistic adults and aims to address health disparities, especially among underserved communities, including racial and ethnic minorities and rural populations.
- 2019: ICD-11 (Eleventh Revision) ntroduces a major change by adopting the term Autism Spectrum Disorder (ASD), consolidating various autism subtypes (such as Asperger’s Syndrome and PDD-NOS) under a single umbrella diagnosis, similar to the changes made in the DSM-5 (2013). The focus shifts to recognizing autism as a spectrum with varying levels of support needs. ICD-11 also introduces a focus on functional impairments associated with ASD and acknowledges the need for varying levels of support across the lifespan, making the classification more aligned with current research on autism as a lifelong condition.
- 2019: Climate activist Greta Thunberg, an openly autistic individual, gains global recognition, challenging stereotypes about what autistic individuals can achieve.
- 2019: Kenya passes the Autism and Developmental Disabilities Bill, becoming one of the first African countries to legislate support services for autism. The bill mandates government funding for special education programs, early diagnosis, and community-based support for autistic individuals.
- 2020: The CDC reports autism prevalence at approximately 1 in 54 children. Research increasingly focuses on co-occurring conditions, such as anxiety and epilepsy, as well as autism across the lifespan, including in aging adults.
- 2020: The IACC shifts some of its focus to the impact of the COVID-19 pandemic on the autistic community, particularly in relation to accessing healthcare and educational services through telehealth and virtual platforms. The committee begins addressing the unique challenges the pandemic poses for autistic individuals and their families.
- 2020: Greta Thunberg, the autistic Swedish climate activist, is named TIME Person of the Year, bringing further visibility to autism in public life and challenging misconceptions about what autistic individuals can achieve.
- 2020: WHO launches Global Initiative on Autism a project aimed at addressing the challenges of autism diagnosis and care in low- and middle-income countries. The initiative focuses on improving training, early diagnosis, and intervention programs, while also raising global awareness about autism.
- 2020: European Autism Action: The European Parliament passed a resolution for a European strategy on autism, highlighting the need for coordinated autism policies across Europe, focusing on early intervention, education, and employment.
- 2020: Autism advocacy continues to grow in Latin America, with Brazil leading efforts to promote inclusive education and early diagnosis programs. Mexico and Argentina strengthen national policies supporting autistic individuals in healthcare and education, advocating for better training for educators and healthcare workers.
- 2021: The World Health Organization (WHO) releases updated guidelines on autism, stressing early diagnosis and ongoing support services throughout life, especially in low- and middle-income countries. WHO emphasizes the importance of developing national autism strategies within countries to ensure sustainable services for autistic individuals. These strategies encourage governments worldwide to invest in autism. research, diagnosis, and community-based care
- 2021: Lifelong Autism Services become a major advocacy focus, with governments worldwide beginning to recognize the lack of adult services and employment opportunities for autistic individuals.
- 2021: The "Lancet Commission on the Future of Care and Clinical Research in Autism" releases recommendations for prioritizing lifelong care, emphasizing the need for better adult diagnostic tools and services for aging autistic populations.
- 2021-2030: Autism-Europe: This umbrella organization works with the European Union to promote the rights of autistic people across Europe, helping to secure the European Disability Strategy (2021-2030), which includes provisions for autistic individuals.
- 2021: In Sub-Saharan Africa, countries like Uganda, Ghana, and Tanzania begin developing autism awareness campaigns with support from international organizations. Programs focus on educating communities about autism acceptance and improving access to diagnosis in rural areas. In Uganda, the Autism Awareness Care and Training Centre (AACT) plays a vital role in raising awareness and offering training for parents and teachers.
- 2022: In Brazil, the Autistic Person’s Statute is implemented, protecting the rights of autistic individuals and establishing a national policy that mandates inclusive education, healthcare access, and employment support for individuals on the spectrum. Other Latin American countries, like Chile and Colombia, follow suit, enacting autism legislation to ensure better services and protections for their autistic populations.
- 2022: Autism is increasingly understood through the lens of the neurodiversity movement, emphasizing a strengths based approach.
Read more on timelines... An Evolving Landspace of Autism Research...
Vacanza in Italia
Italy was a vacation of awe with art, architecture, music and countryside, all rolled into one trip over spring break
First it was Florence - highlights- Vasari's fresco on the ceiling of Brunelleschi's Duomo , Michelangelo's David, da Vinci interactive museum with his inventions, Uffizi museum (too many magnificent works of art) and the Medici chapel (Donatello sculptures). You can just stare for hours at the profound simplicity of the scenes and the thoughts the David statue evokes. And the exterior sculptures of many of the buildings were quite breathtaking as was the Neptune fountain.
As delightful as the Uffizi museum was, the sheer volume of art became too overwhelming at some point (too much awe!!) so had to leave after 2 hours(i guess there is a limit to a person's ability for "accommodation" /cognitive shift aspect of awe, which made me think of what some autistics had written about in my awe study). But did manage to see a good part of the museum, Botticelli a definite favorite.
Day in Tuscany- Siena (cathedral with black white striped Moorish influence architecture), the medieval town of San Gimignano (claims world's best gelato and tower houses - one room per floor, tall and narrow) and Pisa (climbed to top of leaning tower).
Venice was delightfully unique indeed with its canals and quite different from Florence. But extremely crowded with tourists. Highlights were the gondola ride, the vaporetto rides, snacking by the waterfront, the ceiling of St Mark's cathedral with its byzantine influence, frescos in the Doge's palace, and a Vivaldi 4 seasons concert. I totally noticed my mouth open, jaw drop as I was listening to Vivaldi, quite mesmerizing, and it was like my body became still, and out of body feeling (the physiological sensations associated with awe).
We also took a day trip to islands in venetian lagoon- Murano ( glass making, somehow not so awed, over commercialized) , Burano (saw an old lady make lace as well as a whole bunch of pigeons trying to cleverly outwit each other over a piece of sandwich I accidentally dropped) and Torcello which had a lovely Roman chapel, only 10 residents but a few hundred tourists.
Planned to visit Verona (of Shakespeare fame) not happen as covid travel test arrangements took up good chunk of day.
Have to wonder why Euro door knobs are in middle of door instead of to the side. Was it all about aesthetics of a symmetrical pleasing look. Turns out that the central placement of a door know provides greater leverage and ease of use, especially in the larger/heavier doors and it makes it more difficult for intruders to open the door as force must be applied directly to the center of the door rather than at the edge where the lock is located.
I held up the Tower of Pisa
With a tilt and a twist, like Galileo's wrist
Galileo throwing objects from the top
Law of falling bodies nonstop.
The Double Empathy Problem
Autism Lexicon - The Double Empathy Problem.
Double Empathy Problem refers to the mutual challenges in social understanding and empathy between autistic and neurotypical individuals, arising from differences in communication styles and cognitive processing. [ Read in more detail here]
PlainSpeak. Double Empathy Problem is the idea that both autistic and non-autistic people can struggle to understand each other because they communicate and interpret social cues differently. [Read more in plain language here]
Double Empathy Problem refers to the mutual challenges in social understanding and empathy between autistic and neurotypical individuals, arising from differences in communication styles and cognitive processing. [ Read in more detail here]
PlainSpeak. Double Empathy Problem is the idea that both autistic and non-autistic people can struggle to understand each other because they communicate and interpret social cues differently. [Read more in plain language here]
Related Posts on [The Double Empathy Problem]
Atypical
"Atypical" refers to behaviors, cognitive processes, or neurological patterns that differ from the norm in the general population. In autism, this term can describe variations in social interaction, communication, sensory processing, and cognitive functioning. It can also be used as a way to refer to individuals with autism, acknowledging their neurodiverse characteristics.[Read in more detail]
PlainSpeak "Atypical" means that a autistic might think, act, or process things differently from most people. It can also be a way to describe someone with autism, highlighting the unique ways their brain works.[Read more PlainSpeak version]
Earthquake Alert
A sharp jolt at 9:44am, the whole house shook. Too sharp to miss. 2.8 magnitude. Epi-center in El Cerrito, which is the next city.
What students say on intersections of autism.
Sharing some some student midterm papers on different intersections from my 1:54 Autism Spectrum Class this semester on this topic.
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